On Having Chemo AND Being in "Remission"

Theoretically I am still in remission. That is what all the tests say. I have no tumour markers in my blood work nor has any cancer come up in my recent PET and CT scans. Yet, we know for a fact the cancer has returned.  How did this come to light? Let me explain.

When I was first diagnosed with breast cancer in 2005 it was discovered it was HIGHLY estrogen receptor positive meaning that the estrogen in my body was fueling the cancer's growth. This is not unusual and there are drugs used to remove estrogen from the body. I was put on Tamoxifen for this reason and eventually started receiving monthly Zoladex injections which turned off my ovaries completely. Theoretically that should have kept my cancer at bay.

After a few years of these monthly Zoladex injections I asked my oncologist if having my ovaries removed was not a simpler option. She agreed that since it didn't seem likely that I could ever stop taking the medication and that I was having some undesirable side-effects that might be resolved from a simple oophorectomy, going that route was a reasonable choice.

So on August 18th, 2011 I had elective surgery to yank my lady egg sacs. I woke up from the procedure feeling surprisingly good and was chatting with my mom when my surgeon arrived at my bedside. She looked like she was about to cry and told me that once she had entered my abdominal cavity she found small white cancerous deposits all over the place. Most of them were under 3 mm which would make them invisible on a scan but she had removed a couple larger ones for testing. She went on to tell me that I would likely need more chemo.

I'm not sure why but I was not particularly shocked or even that upset. Maybe it is because once you've heard a cancer diagnosis it is always in the back of your mind it will come back and you will hear it again.  Even being declared cancer-free you are never really free of the memories or thoughts of it returning. You are certainly not free of the scars and even side-effects of your treatment. Cancer never entirely leaves you after you've had it.

I remember feeling sad for the doctor that she was so upset telling me this news and I patted her arm and told her it would be okay.

She went on to tell me that while these cancerous spots were all over my peritoneum the rest of my organs, including my ovaries, looked fine. This was not entirely true as when the test results came back it turned out my ovaries were "completely" cancerous and that 1.5 cm biopsy of my bowel came back cancerous as well. One thing I knew from the start is that my type of breast cancer, lobular carcinoma, can be sneaky. It doesn't produce actual tumours but simply infiltrates the tissue, symptomless and invisible, much of the time. I've never had tumour markers in my blood tests. All my biopsies have looked perfectly fine to the human eye but have turned out to be very cancerous. Needless to say my oncologists' calming reassurances of my remission status hasn't meant a whole lot to me over the years.

This type of cancer diagnosis is called an incidental finding. If I had not had this surgery I would have never known the cancer had metastasized. So I am lucky. Not the lottery winning type of lucky but the type who finds out her previously thought cancer in remission was not so remissiony after all and gets to have chemo sooner instead of finding out once it had spread to bones, brain, etc kind of lucky!  WOo!

My oncologists were happy to take a wait-and-see approach for treatment but since I have the sneaky kind of cancer I wasn't that confident conventional testing would identify when things might be getting out of hand. I chose to act aggressively and do chemo right away. Sorta.

I decided to finish my semester at school and managed to do that while recovering from surgery, undergoing tonnes of tests and seeing lots of doctors. My attendance record wasn't pretty and my focus and concentration really sucked but with the help of some very understanding instructors I passed my fall semester with fairly decent grades.

Then I went to Vegas for a week to spend time with a good friend, had Christmas with my family and started chemo in January.

So far it is MUCH less debilitating that my previous chemo regimen. Yet, I can't say I am having a blast either.

When cancer goes rogue like mine has it is likely to be a long-term chronic condition; a disease you can live with, sometimes for many years. The hope is to keep you alive long enough for a better treatment to come along. Only about 7% of people have their metastatic cancer go into full remission. However, I've been oddly lucky so far and my cancer has been weird and rare from the start so I don't see why I can't be part of that statistic.

Well...crap...

Back to the blog. I wish I could tell you it was because so many wonderful things have happened to me I HAD to share them with you. That is not the case. While many wonderful things HAVE happened to me over the last 3 years since I've posted, clearly I was too lazy/ungrateful/oblivious to write them down. This will change.

What has happened, catapulting me back to the blogging world, is that my cancer came back. Badly. Sorta.

It's hard to explain but I will.

In short, I am doing chemo again. I've just finished my second dose out of six. It sucks. I am grumpy.

Amuse me!

Actual Recent Conversation

This is why I love my friend Pablo so much.

While talking on the phone about death, just now.

Me: "I want to be cremated. But I totally don't want to be scattered in the ocean because I am a little scared of the ocean and all the fish and stuff. I don't want to be scattered in the forest either because I don't like bugs and the cold and all that outdoorsy stuff. Maybe I should be scattered in Holt Renfrew...Nah! I can't afford to shop there. I think the place I'd be most comfortable resting eternally is in a couch. So I have to find somebody who will scatter my ashes in their nice comfy couch. Or their mattress. Something cozy."

Pablo: "What about me? What should I do with my remains?"

Me: "Hey! I thought we agreed that I was supposed to throw myself on your casket at your funeral. Wearing a fabulous dress."

Pablo: "Yes, but then are you going to just leave me there to rot?"

Me: "No! What do you want me to do next?"

Pablo: "No wait! I know the perfect place to scatter your ashes. How about a cat cemetery?"

Me: "Perfect! That would be seriously purrrrfect!"

Pablo: "No wait, I totally know what I am going to do with you after you die. I'm going to have you taxidermied! I'll have you sitting on my couch with a cup of tea in a motorized hand. And your head will turn too. And when I have guests they will whisper to me that you are very quiet and I will say, 'Yes, she is.'"

Me: "Put a hinge on my head and store your spare change and keys there. Better yet, put a slit in my neck as a kleenex dispenser for when you are sad or have a cold."

Pablo: "How about I cryogenically freeze your head and then attach it to a garden nymph statue so you can play in the garden and weed it too."

Me: "NO WAIT! Attach my head to a Roomba and I'll vacuum your place for you. Maybe I'll do that with my mom. She likes to clean."

Pablo: "You're sick!"

Me: "NOW I'm sick?"

We finally decided that he will get me made into a diamond and I will have his body mummified and make a pyramid for him in Egypt to be worshipped for eternity.

I Posted! A Sign of the Apocalypse?

Oh mah gah! Where do I begin? I think with a fresh cup of tea. I’ll be right back.

Ok, now I am back but not before getting distracted by 3 different things. And, that, in a nutshell, is the story of the last 3 months.

So many things have happened that I guess I will eventually get them put on paper (cyber paper, that is) but they likely will take on a crazy criss cross pattern easy to spew out but difficult to read. Bear with me.

January-

Honestly, I don’t remember very much of January. It was pretty mellow after being snowed in for a lot of December. Christmas was nice and full of low key visits with my dear friend Tina who was here with her husband and parents from London, England for a family wedding. Then my other best friend, Pablo, came out for Christmas very last moment from Montreal. He and I hung out, ate fattening food, gossiped, and giggled a lot.

From Boxing Day to New Years Day I dog sat Xiola and Lulu. This was totally chaotic, fun and very difficult. Chaotic because that meant 4 fur kids in my very small apartment. Dexter got along fine with them and there was even some mutual grooming and kisses going on with the dogs. Yoshi, as expected freaked the fuck out, went on a puking binge and pretty much camped out the entire time on my bed which was festively covered in bright beach towels so I was not forced to strip my pukey bed every day and wash every damned thing.

Fun because I just love those damned dogs.

Difficult because it was so frickin’ cold and snowy it was physically very hard to walk them daily. Vancouver is not used to this kind of show so most sidewalks were unshovelled and extremely treacherous. I actually found it better to walk the dogs in the nearby business district late at night when it was practically deserted. Due to its high foot traffic during the day the skyscrapers had their walkways cleared very nicely. And when walking a large German Shepardy kind of dog one feels very safe in a mostly empty downtown core.

On the health front things have been somewhat challenging. Lots of tests and doctor appointments. So far everything is fine but once cancer has been part of your life every little thing gets poked and prodded and scanned and tested. I have an MRI on Wednesday and an appointment with an allergist next month. The MRI is for a lump that has come up near my cancer surgery site. I’ve been told by everybody that it is not cancer but nobody can agree on what it actually is, hence the scan. The allergist is due to persistent and somewhat alarming hives that I am getting almost on a daily basis. I think all this health crap needs its own post (and be kicked firmly in the crotch!) so I will get to that when more test results are in. So, yes, I am fine. Just a lumpy, itchy, blotchy fine.

I think I’ve posted that I been working at a new job. I LOVE MY JOB! I won’t get too into the details except to say I love my co-workers, I love the people I come into contact with on my shifts and I love that the way my job is set up it is PERFECT for a crazy person like me who has panic issues. Things are getting busier this year so now it is pretty much a 3 night a week gig. Nice little bit of extra funds coming in that allows me the luxuries like regular hair-cuts, shoes and the occasional take-out falafel.

So that is my January. I’ll get the February soon. Hopefully before April. So other topics will include:

-Dexter the kitten.

-My 40^th birthday.

-Life and Death-that weird and wonderful cycle.

-My business.

-Other horrendous boring minutia.

Check Out The Real Talent!

Yoshi is not the only famous one in my family. My 19 year old cousin, Julie Jonas, is featured in an online magazine showing up and coming Alberta talent. She is an incredibly gifted musician and actor as well as a university student.

Go here to listen to her music and flip ahead in the online mag to read the article.

I am so proud of her.

A Tidbit

I am debating on whether or not to buy a Roomba. They are going on sale for super cheap next week. I fear the Roomba might terrify Yoshi. I also am afraid that Dexter will terrify the Roomba AND Yoshi. However, I hate vacuuming so my selfish desires might win out.

What do you think?

Merry Christmas Everybody!

It is 11pm and I've finally finished wrapping all the gifts and have a moment to sit down to write a little note. I'll be posting soon now that things have settled down a bit.

Here is what has been happening with me:

-still working the part-time job.
-trying desperately to sell calendars in a horrific economic climate (and failing dismally).
-organizing a large gala fund-raising event as well as participating in it.
-getting my Occupational First Aid Level 1 certificate.
-making Christmas gifts as well as shopping.
-working some free-lance jobs to attempt to pay off my huge calendar printing bill.
-yelling at Dexter (all 9lbs of him!) to GET DOWN! and LEAVE YOSHI ALONE!
-volunteering as much as I can.
-driving down to the US for business.
-hanging out with my friends who are visiting from London, England.
-hanging out with my friend who is visiting from Montreal.
-actually being a little social and going out as well as inviting people over for snacks.
-decorating for Christmas.
-being stranded by huge amounts of snow.
-eating my weight in sugary treats.

Here's what will be happening in the near future:

-dog sitting Xiola and Lulu for a week.
-more hanging out with my friend from Montreal.
-saying a sad good-bye to my friends from London, England.
-taking down all the decorations.
-DESPERATELY!!!!!! trying to sell calendars.
-fighting a parking ticket in traffic court.
-many trips to the US for my business.
-resuming my new part-time job.
-more volunteering.
-purging junk and re-organising my stuff.
-trying to lose the weight from all those sugary treat.

Stay tuned!

Yoshi, Dexter and I wish you all a Very Merry Christmas!